Charity and website news

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We have been rather quiet on the website front recently as all of our efforts have been going into the establishment of a CSF Leak charity here in the UK, the broad aims and objectives of which will be to raise awareness, improve access to the correct  investigatory and treatment, and support research into csf leaks and their prevention and cure.

Trustees have bebeen identified and we hope to lodge an application with the Office of the Scottish Charity Commissioner in the coming months. Once the application process has been completed, our informal group will become a formal charity; membership will be open to anyone and fundraising will begin in order to support our work. We are all volunteers, many of whom suffer from active csf leaks, so welcome all offers of help and support.

As part of our transition to charitable status, this website will become our ‘shop front’. We will be making a few changes to facilitate this and updating/improving content. We don’t intend to make many content changes in the meantime, so please bear with us and accept our apologies for any static content, glitches etc. over the next few months.

New CSF Leak Videos from Cedars-Sinai

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Check out the new series of CSF Leak videos, featuring Dr Wouter Schievink from Cedars-Sinai Hospital, California, one of the world’s foremost specialists in Cerebrospinal Fluid Leak diagnosis and treatment.

The videos can be found in our ‘About CSF Leaks’ section or by clicking here.

CSF Leak Questions Answered by Dr Schievink

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We’re pleased to announce that with the kind permission of the CSFleak.org Forum, we are able to publish a recent Questions and Answers session with leading CSF leak expert, Dr Wouter Schievink. The questions were posted by members of the CSFleak.org forum during January 2014 and answers were provided on 4 April 2014. We are deeply grateful to the administrators of the forum for arranging and managing the Q&A session and for making the information available.

Dr Schievink is one of the world’s foremost experts on CSF leaks and Spontaneous Hypertension. Originally from The Netherlands, but now practicing Cedars-Sinai Hospital in California, he has conducted a number of studies into the diagnosis and treatment of CSF leaks and many specialists in the UK base their approach on his work.

This valuable information sheds light onto many of the questions and issues faced by leakers across the UK and Ireland. Dr Schievink’s advice will also be of relevance to GPs and other medical professionals dealing with patients presenting with persistent daily headaches and other symptoms of intracranial hypotension.

You can view the Q&As online by clicking here or download them by clicking here.

Edinburgh Evening News: GEORGE CLOONEY CSF LEAK PAIN

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PAIN DROVE CLOONEY TO CONSIDER SUICIDE

One of Holywood’s biggest stars, George Clooney, has also spoken of his struggle with it, admitting the pain was so excruciating that he considered suicide.

While Deborah’s leak is in her spine, his was around his brain, and caused CSF fluid to drip out through his nose.

Clooney was injured during the filming of a torture scene in Syriana in 2005, and told TV interviewer Larry King: “I cracked the back of my head and I thought I had an aneurysm because my head hurt so bad.

“So, I got a plane and got out of Morocco and went to Cedars-Sinai [hospital] and I was there for about a week and a half before they figured out what was wrong.”

Bedridden with severe headaches, he later told Rolling Stone magazine: “I was at a point where I thought ‘I can’t exist like this. I can’t actually live’.

“I was lying in a hospital bed with an IV in my arm, unable to move, having these headaches where it feels like you’re having a stroke, and for a short three-week period, I started to think, ‘I may have to do something drastic about this’ . . . but I never thought I’d get there,” he said. “See, I was in a place where I was trying to figure out how to survive.”

Although he never attempted to take his own life, he began to drink heavily until the symptoms were finally relieved by surgery – but still suffers from bad headaches.

Read the article here: http://www.edinburghnews.scotsman.com/news/health/health-how-spinal-condition-lead-to-crippling-headaches-1-2150059